SOCIETY OF DERMATOLOGY PHYSICIAN ASSISTANTS

LYNNE LAMBERG'S

THE DERMATOLOGY PATIENT'S GUIDE 
TO THE INTERNET

(POSTED WITH THE AUTHOR's PERMISSION)
Lynne Lamberg
e-mail: llamberg@nasw.org
Presented at
Dermatology & the Information Superhighway Symposium
American Academy of Dermatology Annual Meeting
02/28/98, Orlando, FL
(Updated March 2001)


Also, check out Lynne's book (co-authored with Michael Smolensky, PhD).

The authors, Michael Smolensky, PhD, who is director of the Memorial-Hermann Chronobiology Center and a professor at the University of Texas-Houston's School of Public Health, and Lynne Lamberg, a health writer, explain how monitoring one's clock by keeping a "chronorecord"--a personal chart that maps variations in mood, alertness, sleep cycle, eating habits, and symptoms of pain--can empower us in achieving long-term vitality. Chapter by chapter, they show how timing is everything, whether applied to weight loss, sleep, sex, exercise, or recovery from illness. In the section "Sickness and Health from A to (Nearly) Z," they address issues ranging from depression and hay fever to heartburn and skin disorders, giving practical advice on how to integrate awareness of the body clock and conventional treatment methods. 

(Excerpt from review posted at amazon.com)

The American Academy of Dermatology lists patient support organizations and provides links on its website.

Support groups may be found in news groups at public locations or may be obtained via lists, delivered to your e-mail address. A list's messages may arrive singly, or if the list offers the option, in one batch called a digest.

Some groups are moderated, meaning an administrator views and perhaps removes postings that are obscene, off the subject, or commercial. Others are unmoderated, meaning anything goes. Many list maintain searchable archives.

To find newsgroups, try Deja News and Reference.com. Search on "skin disorders". You'll see messages from such groups as alt.support.skin.disorders, alt.support.skincare.acne, and alt.support.scleroderma. Click on a particular message to read it. Entries serve as links to take you to the newsgroup.

Subscribe to any of the lists below by sending an e-mail message to the listserve address. Leave the subject line blank. In the message of the text write:

subscribe listname yourfirstname yourlastname

Turn off your signature file, or your mail will be returned. You may be asked to indentify yourself as a patient, family member, physician, etc. Some lists have specific membership criteria, while others are open to all.

Note: list addresses change frequently. If the address below no longer is in service, search for the specific disorder using any search engine, or consult one of the reference books listed at the end of this page. You may also try Liszt Select.

ONLINE SKIN-DISEASE PATIENT 
SUPPORT GROUPS & INFORMATION

ALOPECIA

listserv@neurpath2.mcg.edu (subscribe alopecia)

NATIONAL ALOPECIA AREATA FOUNDATION
Frequently Asked Questions & Homepage
74301.1642@compuserve.com

CTCL/MYCOSIS FUNGOIDES

listserv@acor.org (subscribe ctcl-mf)

DERMATITIS HERPETIFORMIS AND CELIAC DISEASE

listserv@acor.org (subscribe celiac)

ECZEMA

listserv@sjuvm.stjohns.edu (subscribe eczema)

LUPUS-L

listproc@piper.hamline.edu (subscribe lupus-l)

MASTOCYTOSIS SOCIETY (TMS)

listserve@nic.surfnet.nl (subscribe tms-l)

MELANOMAS

MELSUB@mwt.net (subscribe mel-l)
Website: Click on "Patient Stories Page"

PEMPHIGUS

NATIONAL PEMPHIGUS FOUNDATION (subscribe pvsupport)

PORPHYRIA

AMERICAN PORPHYRIA FOUNDATION

PSEUDOXANTHOMA ELASTICUM (PXE)

majordomo@listserv.bc.edu (subscribe PXE)

SJOGREN'S SYNDROME

tbertram@ux1.eso.uiuc.edu (subscribe ss-l)

STURGE-WEBER

swf@pobox.com

VITILIGO

listserv@sjuvm.stjohns.edu (subscribe vitiligo)
Vitiligo Information

ONLINE PATIENT INFORMATION RESOURCES

ALBINISM

The National Organization for Albinism and Hypopigmentation (NOAH)

DYSTROPHIC EPIDERMOLYSIS BULLOSA

Dystrophic Epidermolysis Bullosa of America (DEBRA)

ECTODERMAL DYSPLASIA

NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIA
Contact: nfed1@aol.com

ELASTIC

(Education Latex Allergy Support Team & Information Coalition)
http://www.latexallergyhelp.com

GLUTEN INTOLERANCE GROUP

write Mike Jones

ICHTHYOSIS

Foundation for Ichthyosis and related skin types

INCONTINENTIA PIGMENTI

nnff@aol.com

PSORIASIS

NATIONAL PSORIASIS FOUNDATION
http://www.psoriasis.org

REFLEX SYMPATHETIC DYSTROPHY

REFLEX SYMPATHETIC DYSTROPHY SYNDROME ASSOCIATION
http://www.rsds.org/rsdsaof.htm

ROSACEA

NATIONAL ROSACEA SOCIETY
http://www.rosacea.org

SCLERODERMA

SCLERODERMA FEDERATION, INC.
http://www.scleroderma.org

SJOGREN'S SYNDROME

SJOGREN'S SYNDROME FOUNDATION, INC.
http://www.sjogrens.com

TRICHOTILOMANIA

wsweeney@acad.albion.edu
also support groups at AOL, Prodigy

TUBEROUS SCLEROSIS

NATIONAL TUBEROUS SCLEROSIS ASSOCIATION
http://www.tsalliance.org/default.asp

VULVODYNIA

NATIONAL VULVODYNIA ASSOCIATION
mgmnvd@aol.com

XERODERMA PIGMENTOSUM

XERODERMA PIGMENTOSUM SOCIETY

BOOKS


Davis, James B.
Health and Medicine on the Internet 2001
Los Angeles, CA Health Information Press, 2001

Detwiler, Susan M.; Basch, Reva, and Barrett, Stephen
Super Searchers on Health & Medicine: The Online Secrets of Top Health & Medical Researchers
Medford, NJ: Cyberage Books, 2000

Schneider, Jay S., PhD, Lidsky, Theodore I., PhD
The Doctor's Always In : A Guide to 1000+ Best Health and Medical Information Sites on the Internet
Cherry Hill, NJ: Neuroinformatics Inc., 1999

Wood, M. Sandra (Editor)
Health Care Resources on the Internet : A Guide for Librarians and Health Care Consumers
Binghamton, NY: Haworth Press, 1999

White, Barbara, and Madara, Edward, editors.
The Self-Help Sourcebook: Your Guide to Community and Online Support Groups, 6th Ed.
http://mentalhelp.net/selfhelp/
 

© Copyright 1998 by Lynne Lamberg